I am a mom of 3 beautiful kids. Marley has autism and left hemiparesis Cerebral Palsy. Skylar has recovered from sensory processing disorder and my boy, Xander, is neurotypical with severe, life-threatening food allergies.

Thursday, June 11, 2015

Here we are. Fifth
grade graduation.The school gym is hot
and sticky.It is noisy with kids eager
to get summer vacation started.The
smell of sweaty kids is in the air.There
is laughing and talking and all the echoes that a gymnasium brings.Parents have gathered with their cameras and
video cameras to watch their 5th grader move on to middle school.I smile at my husband who has been my rock,
then I slowly scan the room taking it all in.The proud parents smiling.The wistful
parents with misty eyes.The busy parents
chatting with each other.And I am amazed
that we even got here.

For me, this day brings a multitude of emotions.My 5th grader is not your typical
5th grader.She has
challenges.She was born with a major
brain bleed that affects her motor skills.She has autism.She has
autoimmune and other medical diagnoses.I flashback to when she started kindergarten here, seven years ago.Marley was five and she and I were both
frightened.She had to be in a self-contained
classroom because she couldn’t tolerate any sensory stimuli.She had a few words but she did not talk in
complete sentences.Many days, I had to
carry her into the school, kicking and screaming where I would place her into
the care of “autism specialists” and they would escort her into a tent in a
quiet corner of the room where she spent most of the day shivering and
receiving therapies in the tent.I would
walk back to my car and cry for hours, not knowing if I could stand the pain
much longer.It was a heartbreaking
time.

The following year, she was left behind to try kindergarten again.This year, they would try to bring her to the
mainstream kindergarten classroom for a few minutes each day.Maybe just for circle time so she could see
what typical peers do.She needed someone
by her side every minute to keep her focused and engaged.And even then, it didn’t last long.Then, back to the self-contained classroom
she went.

In first grade, a boy in her self-contained class sent the special needs
teacher to the hospital with a concussion.When I brought her to school the next day, they had moved my daughter’s
desk across the room…. To keep her safe, they said.The boy had his own “body guard” assigned.And my heart sank. Something had to be done.She could not stay in this environment.We were still using hyperbaric oxygen therapy
and getting progress but there had to be more.I did more research. Her diet was
extremely healthy and free from anything inflammatory.Then we found eosinpahilic esophagitis and
removed eggs from her diet (in addition to the gluten and dairy and soy she was
already free of) and removed the cat from the house and she got better still.

In second grade, I decided that I would take a leap of faith and enroll her in
the Brain Balance Program.It was my
last ditch effort to get her mainstreamed.By May, her team recommended full mainstreaming in 3rd
grade.I
remember the school speech therapist saying... "Kelly ... this is a BIG
deal. Once they are in self-contained classrooms, it is hard to get out."I had to hold back my tears of joy.

Third grade in the mainstream classroom was quite an adjustment.Her constant scripting (reciting lines to
herself over & over again) was disruptive and her rigidity led to some
meltdowns.On her bad days, her screams
of frustration were heard throughout the hallways.However, her teachers called meetings often
to discuss what we should do.They involved
me in her education.They devised ways
to keep her focused and her anxiety levels down with schedules and
modifications.And the kids….they
embraced Marley.They watched out for
her.If there were younger kids
whispering about her in the halls, the kids in her class stepped forward and
said something to those kids.They would
not tolerate it.

Over the summer, we used ALA (alpha lipoic acid) and saw a whole new self-aware Marley emerge.It took her healing to a new level and
teachers noticed right away.
Fourth grade got better still, due in large part to a brand new, fresh out of
school, teacher.She was even-keeled,
never got upset, and worked very hard to accommodate Marley and her needs while
helping her reach her potential.One
day, she gave Marley a watch.Marley had
been anxious in music class and no one could figure out why.Turns out, there was no clock in the music
room, so Marley did not know when it was time to leave.The watch changed things for Marley
dramatically.Her anxiety came way
down.Her scripting stopped.We were off and rolling.Her reading was on-grade level.Math word problems were difficult but Math
computation was her strong suit.We got
her a laptop so she did not have to hand-write everything and her creative writing
took off too.

In fifth grade, Marley’s fourth grade teacher was moved up to fifth grade and
Marley got to have her again.We
discovered via lumbar puncture that Marley has Cerebral Folate deficiency, and
started her on Leucovorin for the folate and LevoCarnitine to support her mitochondria
and it was like her brain suddenly had the energy it needed to THINK. It has also helped her anxiety a ton. Her
teacher raised money and bought exercise balls for the kids to sit on instead
of chairs.The kids loved them.Marley loved hers too.Marley got into a routine.She was serious about her homework.She did it right when she got home and often independently.She was a transformed child.

As I am reliving all of these memories, I realize that Marley is
HERE…..in this big, noisy, echoing gym.She
is not sitting with me. She is not wearing noise-blocking headphones.She is not stimming.She is not flapping.She is not scripting.She is not in her own world.She is not being escorted by an aide
everywhere she goes.She is sitting with
her peers and then waiting patiently in line.She is looking for us to wave at us.She is smiling and fully connected.She is aware of this moment and all the excitement this time brings for
her.And this makes my heart fill with
pride and gratitude, for it is then that I grasp that sometimes you have to
feel the pain and the struggle and do the incredibly hard work to really, truly
feel the joy.

Marley has waited patiently in line, and finally, her name is announced into
the microphone.When it is, an enormous
cheer erupts from the audience. I gasp at the hoots and hollers for her and the enormity of
support from her fellow students, other parents and teachers in this gym.I start to shake gently as my tears start to
flow.It is evident that people love her
and have been cheering for her right along with us.Her success makes everyone in the building
proud of her.Marley takes her
certificate and poses for a picture with her teachers and then very casually
walks off stage just as she is supposed to do.She stands and sings a song with her class to the parents.She participates in a dance with the other
kids and calmly watches videos of moments past.Things that would have been impossible just a few short years ago.

I close my tearing eyes and just let these feelings rush over me like a tidal
wave.I slow my breathing and just feel
the pure joy of the moment…… because I have no doubt there will be more
challenges in the future but right now…..I just want to breathe in the
happy.

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About Me

I am a mom on a mission to bring our daughter back to us from the grips of autism. This journey has shown me the importance of nutrition and supplementation in ASD kids, detoxification, green living and a great support system for healing. I have learned many lessons...some the hard way and I have created this blog to help anyone who may be interested in the lessons we have learned.